Associations Between Hyperphagia, Symptoms of Sleep Breathing Disorder, Behaviour Difficulties and Caregiver Well-Being in Prader-Willi Syndrome: A Preliminary Study / Jessica MACKAY in Journal of Autism and Developmental Disorders, 52-9 (September 2022)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 52-9 (September 2022) . - p.3877-3889 Titre : Associations Between Hyperphagia, Symptoms of Sleep Breathing Disorder, Behaviour Difficulties and Caregiver Well-Being in Prader-Willi Syndrome: A Preliminary Study Type de document : Texte imprimé et/ou numérique Auteurs : Jessica MACKAY, Auteur ; Gillian M. NIXON, Auteur ; Antony R. LAFFERTY, Auteur ; Geoff AMBLER, Auteur ; Nitin KAPUR, Auteur ; Philip B. BERGMAN, Auteur ; Cara SCHOFIELD, Auteur ; Chris SETON, Auteur ; Andrew TAI, Auteur ; Elaine THAM, Auteur ; Komal VORA, Auteur ; Patricia CROCK, Auteur ; Charles VERGE, Auteur ; Yassmin MUSTHAFFA, Auteur ; Greg BLECHER, Auteur ; Daan CAUDRI, Auteur ; Helen LEONARD, Auteur ; Peter JACOBY, Auteur ; Andrew WILSON, Auteur ; Catherine S. CHOONG, Auteur ; Jenny DOWNS, Auteur Article en page(s) : p.3877-3889 Langues : Anglais (eng) Mots-clés : Autism Spectrum Disorder  Caregivers  Child  Humans  Hyperphagia  Prader-Willi Syndrome/genetics  Quality of Life  Sleep  Sleep Wake Disorders  Growth hormone  behaviour  Parental well-being  Prader-Willi syndrome Index. décimale : PER Périodiques Résumé : Prader-Willi syndrome (PWS) is a rare genetic disorder characterised by neurodevelopmental delays, hyperphagia, difficulties with social communication and challenging behaviours. Individuals require intensive supervision from caregivers which may negatively affect caregiver quality of life. This study used data collected in the Australasian PWS Registry (n=50, mean age 11.2 years) to evaluate associations between child behaviours and caregiver mental well-being. Symptoms of sleep-related breathing disorder, child depression and social difficulties were associated with poorer caregiver mental and physical well-being. Growth hormone therapy use was associated with better caregiver mental and physical well-being. Optimising management of problematic behaviours and sleep disturbances have the potential to support caregivers who are the most vital network of support for individuals affected by PWS. En ligne : http://dx.doi.org/10.1007/s10803-021-05265-5 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=485 [article] Associations Between Hyperphagia, Symptoms of Sleep Breathing Disorder, Behaviour Difficulties and Caregiver Well-Being in Prader-Willi Syndrome: A Preliminary Study [Texte imprimé et/ou numérique] / Jessica MACKAY, Auteur ; Gillian M. NIXON, Auteur ; Antony R. LAFFERTY, Auteur ; Geoff AMBLER, Auteur ; Nitin KAPUR, Auteur ; Philip B. BERGMAN, Auteur ; Cara SCHOFIELD, Auteur ; Chris SETON, Auteur ; Andrew TAI, Auteur ; Elaine THAM, Auteur ; Komal VORA, Auteur ; Patricia CROCK, Auteur ; Charles VERGE, Auteur ; Yassmin MUSTHAFFA, Auteur ; Greg BLECHER, Auteur ; Daan CAUDRI, Auteur ; Helen LEONARD, Auteur ; Peter JACOBY, Auteur ; Andrew WILSON, Auteur ; Catherine S. CHOONG, Auteur ; Jenny DOWNS, Auteur . - p.3877-3889. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 52-9 (September 2022) . - p.3877-3889 Mots-clés : Autism Spectrum Disorder  Caregivers  Child  Humans  Hyperphagia  Prader-Willi Syndrome/genetics  Quality of Life  Sleep  Sleep Wake Disorders  Growth hormone  behaviour  Parental well-being  Prader-Willi syndrome Index. décimale : PER Périodiques Résumé : Prader-Willi syndrome (PWS) is a rare genetic disorder characterised by neurodevelopmental delays, hyperphagia, difficulties with social communication and challenging behaviours. Individuals require intensive supervision from caregivers which may negatively affect caregiver quality of life. This study used data collected in the Australasian PWS Registry (n=50, mean age 11.2 years) to evaluate associations between child behaviours and caregiver mental well-being. Symptoms of sleep-related breathing disorder, child depression and social difficulties were associated with poorer caregiver mental and physical well-being. Growth hormone therapy use was associated with better caregiver mental and physical well-being. Optimising management of problematic behaviours and sleep disturbances have the potential to support caregivers who are the most vital network of support for individuals affected by PWS. En ligne : http://dx.doi.org/10.1007/s10803-021-05265-5 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=485

Brief Report: Burden of Care in Mothers of Children with Autism Spectrum Disorder or Intellectual Disability / Jenny FAIRTHORNE in Journal of Autism and Developmental Disorders, 46-3 (March 2016)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 46-3 (March 2016) . - p.1103-1109 Titre : Brief Report: Burden of Care in Mothers of Children with Autism Spectrum Disorder or Intellectual Disability Type de document : Texte imprimé et/ou numérique Auteurs : Jenny FAIRTHORNE, Auteur ; Nick KLERK, Auteur ; Helen LEONARD, Auteur Article en page(s) : p.1103-1109 Langues : Anglais (eng) Mots-clés : Intellectual  Autism  Psychiatric  Maternal  Mothers  Down  Hospitalisation Index. décimale : PER Périodiques Résumé : Compared to other mothers, mothers of children with autism spectrum disorder (ASD) or intellectual disability (ID) have higher rates of treatment episodes for psychiatric disorders. We aimed to estimate the maternal burden of care by comparing the length of hospitalisations for psychiatric disorders and the treatment rates for psychiatric disorders after the birth in mothers of children with ASD/ID and no psychiatric history to that of other mothers with no psychiatric history. Mothers of children with ID of known cause (not Down syndrome) and mothers of children ASD without ID emerged as particularly vulnerable. Mothers of children with Down syndrome were resilient. The development of specialised organisations to provide support to mothers of children with ID of known cause (not Down syndrome) and mothers of children with ASD without ID could assist them to maintain their mental health. En ligne : http://dx.doi.org/10.1007/s10803-015-2629-9 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=282 [article] Brief Report: Burden of Care in Mothers of Children with Autism Spectrum Disorder or Intellectual Disability [Texte imprimé et/ou numérique] / Jenny FAIRTHORNE, Auteur ; Nick KLERK, Auteur ; Helen LEONARD, Auteur . - p.1103-1109. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 46-3 (March 2016) . - p.1103-1109 Mots-clés : Intellectual  Autism  Psychiatric  Maternal  Mothers  Down  Hospitalisation Index. décimale : PER Périodiques Résumé : Compared to other mothers, mothers of children with autism spectrum disorder (ASD) or intellectual disability (ID) have higher rates of treatment episodes for psychiatric disorders. We aimed to estimate the maternal burden of care by comparing the length of hospitalisations for psychiatric disorders and the treatment rates for psychiatric disorders after the birth in mothers of children with ASD/ID and no psychiatric history to that of other mothers with no psychiatric history. Mothers of children with ID of known cause (not Down syndrome) and mothers of children ASD without ID emerged as particularly vulnerable. Mothers of children with Down syndrome were resilient. The development of specialised organisations to provide support to mothers of children with ID of known cause (not Down syndrome) and mothers of children with ASD without ID could assist them to maintain their mental health. En ligne : http://dx.doi.org/10.1007/s10803-015-2629-9 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=282

A Comparison of Autism Prevalence Trends in Denmark and Western Australia / Erik T. PARNER in Journal of Autism and Developmental Disorders, 41-12 (December 2011)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 41-12 (December 2011) . - p.1601-1608 Titre : A Comparison of Autism Prevalence Trends in Denmark and Western Australia Type de document : Texte imprimé et/ou numérique Auteurs : Erik T. PARNER, Auteur ; Poul THORSEN, Auteur ; Glenys DIXON, Auteur ; Nicholas H. DE KLERK, Auteur ; Helen LEONARD, Auteur ; Natasha NASSAR, Auteur ; Jenny BOURKE, Auteur ; Carol BOWER, Auteur ; Emma J. GLASSON, Auteur Année de publication : 2011 Article en page(s) : p.1601-1608 Langues : Anglais (eng) Mots-clés : Autism  Autism spectrum disorders  Prevalence  Diagnosis  Denmark  Western Australia Index. décimale : PER Périodiques Résumé : Prevalence statistics for autism spectrum disorders (ASD) vary widely across geographical boundaries. Some variation can be explained by diagnostic methods, case ascertainment and age at diagnosis. This study compared prevalence statistics for two distinct geographical regions, Denmark and Western Australia, both of which have had population-based registers and consistent classification systems operating over the past decade. Overall ASD prevalence rates were higher in Denmark (68.5 per 10,000 children) compared with Western Australia (51.0 per 10,000 children), while the diagnosis of childhood autism was more prevalent in Western Australia (39.3 per 10,000 children) compared with Denmark (21.8 per 10,000 children). These differences are probably caused by local phenomena affecting case ascertainment but influence from biological or geographical factors may exist. En ligne : http://dx.doi.org/10.1007/s10803-011-1186-0 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=148 [article] A Comparison of Autism Prevalence Trends in Denmark and Western Australia [Texte imprimé et/ou numérique] / Erik T. PARNER, Auteur ; Poul THORSEN, Auteur ; Glenys DIXON, Auteur ; Nicholas H. DE KLERK, Auteur ; Helen LEONARD, Auteur ; Natasha NASSAR, Auteur ; Jenny BOURKE, Auteur ; Carol BOWER, Auteur ; Emma J. GLASSON, Auteur . - 2011 . - p.1601-1608. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 41-12 (December 2011) . - p.1601-1608 Mots-clés : Autism  Autism spectrum disorders  Prevalence  Diagnosis  Denmark  Western Australia Index. décimale : PER Périodiques Résumé : Prevalence statistics for autism spectrum disorders (ASD) vary widely across geographical boundaries. Some variation can be explained by diagnostic methods, case ascertainment and age at diagnosis. This study compared prevalence statistics for two distinct geographical regions, Denmark and Western Australia, both of which have had population-based registers and consistent classification systems operating over the past decade. Overall ASD prevalence rates were higher in Denmark (68.5 per 10,000 children) compared with Western Australia (51.0 per 10,000 children), while the diagnosis of childhood autism was more prevalent in Western Australia (39.3 per 10,000 children) compared with Denmark (21.8 per 10,000 children). These differences are probably caused by local phenomena affecting case ascertainment but influence from biological or geographical factors may exist. En ligne : http://dx.doi.org/10.1007/s10803-011-1186-0 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=148

Maternal Psychiatric Disorder and the Risk of Autism Spectrum Disorder or Intellectual Disability in Subsequent Offspring / Jenny FAIRTHORNE in Journal of Autism and Developmental Disorders, 46-2 (February 2016)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 46-2 (February 2016) . - p.523-533 Titre : Maternal Psychiatric Disorder and the Risk of Autism Spectrum Disorder or Intellectual Disability in Subsequent Offspring Type de document : Texte imprimé et/ou numérique Auteurs : Jenny FAIRTHORNE, Auteur ; Geoff HAMMOND, Auteur ; Jenny BOURKE, Auteur ; Nick KLERK, Auteur ; Helen LEONARD, Auteur Année de publication : 2016 Article en page(s) : p.523-533 Langues : Anglais (eng) Mots-clés : Autism  Intellectual  Psychiatric  Mothers  Pre-existing  Prenatal medication Index. décimale : PER Périodiques Résumé : Psychiatric disorders are more common in the mothers of children with autism spectrum disorder (ASD) or intellectual disability (ID) after the birth of their child. We aimed to assess the relationship between women’s psychiatric contacts and subsequent offspring with ASD/ID. We linked three Western Australian registers to investigate pre-existing maternal outpatient psychiatric contacts and the odds of ASD/ID in a subsequent child. Women with a previous outpatient psychiatric contact were more than twice as likely to have a child with ASD [OR 2.07 (95 % CI 1.7, 2.6)] or ID [OR 2.31 (2.1, 2.6)]. Further research exploring the effect on pregnancy outcomes of medications prescribed to women with psychiatric disorders is implicated. En ligne : http://dx.doi.org/10.1007/s10803-015-2594-3 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=280 [article] Maternal Psychiatric Disorder and the Risk of Autism Spectrum Disorder or Intellectual Disability in Subsequent Offspring [Texte imprimé et/ou numérique] / Jenny FAIRTHORNE, Auteur ; Geoff HAMMOND, Auteur ; Jenny BOURKE, Auteur ; Nick KLERK, Auteur ; Helen LEONARD, Auteur . - 2016 . - p.523-533. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 46-2 (February 2016) . - p.523-533 Mots-clés : Autism  Intellectual  Psychiatric  Mothers  Pre-existing  Prenatal medication Index. décimale : PER Périodiques Résumé : Psychiatric disorders are more common in the mothers of children with autism spectrum disorder (ASD) or intellectual disability (ID) after the birth of their child. We aimed to assess the relationship between women’s psychiatric contacts and subsequent offspring with ASD/ID. We linked three Western Australian registers to investigate pre-existing maternal outpatient psychiatric contacts and the odds of ASD/ID in a subsequent child. Women with a previous outpatient psychiatric contact were more than twice as likely to have a child with ASD [OR 2.07 (95 % CI 1.7, 2.6)] or ID [OR 2.31 (2.1, 2.6)]. Further research exploring the effect on pregnancy outcomes of medications prescribed to women with psychiatric disorders is implicated. En ligne : http://dx.doi.org/10.1007/s10803-015-2594-3 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=280

Measuring use and cost of health sector and related care in a population of girls and young women with Rett syndrome / Delia HENDRIE in Research in Autism Spectrum Disorders, 5-2 (April-June 2011)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 5-2 (April-June 2011) . - p.901-909 Titre : Measuring use and cost of health sector and related care in a population of girls and young women with Rett syndrome Type de document : Texte imprimé et/ou numérique Auteurs : Delia HENDRIE, Auteur ; Ami BEBBINGTON, Auteur ; Carol BOWER, Auteur ; Helen LEONARD, Auteur Année de publication : 2011 Article en page(s) : p.901-909 Langues : Anglais (eng) Mots-clés : Rett syndrome  Healthcare  Costs  Resources  Population-based Index. décimale : PER Périodiques Résumé : This study measured use and cost of health sector and related services in Rett syndrome and effects of socio-demographic, clinical severity and genetic factors on costs. The study population consisted of individuals with Rett syndrome registered with the Australian Rett Syndrome Database in 2004. Descriptive analysis was used to examine patterns of resource use and costs, and logistic regression to analyse factors associated with higher costs. We found the use of health sector and related resources varied by type of resource. Mean annual cost per case was $21,158 (range $238–$85,776). High cost items included long-term residential care, therapy services out of school and paid home and community care. Factors associated with increasing odds of being above the median cost were clinical severity and the p.R255X mutation. Compared with the youngest cases, cases in the 5–14 year age group and the 15–24 year age group were at lower odds of being above the median cost. Needs relating to health sector and related resources can result in considerable costs for individuals with Rett syndrome. Many households caring for dependents with Rett syndrome are like to be facing undue financial pressures from the additional costs of disability. En ligne : http://dx.doi.org/10.1016/j.rasd.2010.10.004 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=114 [article] Measuring use and cost of health sector and related care in a population of girls and young women with Rett syndrome [Texte imprimé et/ou numérique] / Delia HENDRIE, Auteur ; Ami BEBBINGTON, Auteur ; Carol BOWER, Auteur ; Helen LEONARD, Auteur . - 2011 . - p.901-909. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 5-2 (April-June 2011) . - p.901-909 Mots-clés : Rett syndrome  Healthcare  Costs  Resources  Population-based Index. décimale : PER Périodiques Résumé : This study measured use and cost of health sector and related services in Rett syndrome and effects of socio-demographic, clinical severity and genetic factors on costs. The study population consisted of individuals with Rett syndrome registered with the Australian Rett Syndrome Database in 2004. Descriptive analysis was used to examine patterns of resource use and costs, and logistic regression to analyse factors associated with higher costs. We found the use of health sector and related resources varied by type of resource. Mean annual cost per case was $21,158 (range $238–$85,776). High cost items included long-term residential care, therapy services out of school and paid home and community care. Factors associated with increasing odds of being above the median cost were clinical severity and the p.R255X mutation. Compared with the youngest cases, cases in the 5–14 year age group and the 15–24 year age group were at lower odds of being above the median cost. Needs relating to health sector and related resources can result in considerable costs for individuals with Rett syndrome. Many households caring for dependents with Rett syndrome are like to be facing undue financial pressures from the additional costs of disability. En ligne : http://dx.doi.org/10.1016/j.rasd.2010.10.004 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=114

Onset of maternal psychiatric disorders after the birth of a child with autism spectrum disorder: A retrospective cohort study / Jenny FAIRTHORNE in Autism, 20-1 (January 2016)  

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The International Collaboration for Autism Registry Epidemiology (iCARE): Multinational Registry-Based Investigations of Autism Risk Factors and Trends / Diana SCHENDEL in Journal of Autism and Developmental Disorders, 43-11 (November 2013)  

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The relationship between MECP2 mutation type and health status and service use trajectories over time in a Rett syndrome population / Deidra YOUNG in Research in Autism Spectrum Disorders, 5-1 (January-March 2011)  

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Unpacking the complex nature of the autism epidemic / Helen LEONARD in Research in Autism Spectrum Disorders, 4-4 (October-December 2010)  

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Use of equipment and respite services and caregiver health among Australian families living with Rett syndrome / Anna URBANOWICZ in Research in Autism Spectrum Disorders, 5-2 (April-June 2011)  

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Validating the Communication and Symbolic Behavior Scales-Developmental Profile Infant-Toddler Checklist (CSBS-DP ITC) Beyond Infancy in the CDKL5 Deficiency Disorder / Helen LEONARD ; Kingsley WONG ; Peter JACOBY ; Mary SPENCE ; Eric D. MARSH ; Tim A. BENKE ; Scott DEMAREST ; Jenny DOWNS in Journal of Autism and Developmental Disorders, 54-7 (July 2024)  

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